Caregivers' perspectives on the pre-diagnostic period in early onset dementia: A long and winding road

International Psychogeriatrics

Volumn 23, Issue 9, 2011, Pages 1393-1404

  Van Vliet, Deliane ^a   De Vugt, Marjolein E ^a   Bakker, Christian ^b,c   Koopmans, Raymond T C M ^c   Pijnenburg, Yolande A L ^d   Vernooij Dassen, Myrra J F J ^c,e   Verhey, Frans R J ^a  

^a MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^b Florence   (Netherlands)

^c RADBOUD UNIVERSITY NIJMEGEN   (Netherlands)

^d VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^e Kalorama Foundation Beek Ubbergen   (Netherlands)

Author keywords

diagnosis; diagnostic issues; first symptoms; grounded theory; impact; informal care

Indexed keywords

ADULT; AGED; ARTICLE; BEHAVIOR DISORDER; CAREGIVER; COGNITIVE DEFECT; DEMENTIA; DIAGNOSTIC ERROR; DIAGNOSTIC VALUE; EARLY ONSET DEMENTIA; FEMALE; FINANCIAL MANAGEMENT; GENERAL PRACTITIONER; HEALTH PERSONNEL ATTITUDE; HUMAN; HYPOTHESIS; MAJOR CLINICAL STUDY; MALE; MARRIAGE; QUANTITATIVE ANALYSIS; REFUSAL TO PARTICIPATE; SEMI STRUCTURED INTERVIEW; SOCIAL ASPECT; WORK;

ADULT; AGED; CAREGIVERS; DEMENTIA; FAMILY; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PATIENT ACCEPTANCE OF HEALTH CARE;

EID: 80053502868     PISSN: 10416102     EISSN: 1741203X     Source Type: Journal    
DOI: 10.1017/S1041610211001013     Document Type: Article

References (37)

1. Allen, J., Oyebode, J. R. and Allen, J. (2009). Having a father with young onset dementia: the impact on well-being of young people. Dementia, 8, 455-480.
2. Ballard, C., Lowery, K., Powell, I., O'Brien, J. and James, I. (2000). Impact of behavioral and psychological symptoms of dementia on caregivers. International Psychogeriatrics, 12, 93-105. (Pubitemid 30599670)
3. Bryan, G. and Martin, C. M. (2005). Unique problems of dementia in the younger patient. The Consultant Pharmacist, 20, 468-479.
4. Cahill, S. et al. (2008). The attitudes and practices of general practitioners regarding dementia diagnosis in Ireland. International Journal of Geriatric Psychiatry, 23, 663-669.
5. Clare, L. (2002). Developing awareness about awareness in early-stage dementia: the role of psychosocial factors. Dementia, 1, 295-312.
6. Clark, P. C. et al. (2005). Impediments to timely diagnosis ofAlzheimer's disease in African Americans. Journal of the American Geriatrics Society, 53, 2012-2017. (Pubitemid 41826084)
7. Connell, C. M., Boise, L., Stuckey, J. C., Holmes, S. B. and Hudson, M. L. (2004). Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians. Gerontologist, 44, 500-507. (Pubitemid 39128884)
8. Corbin, J. and Strauss, A. (1990). Grounded theory research: procedures, canons, and evaluative criteria. Qualitative Sociology, 13, 3-21.
9. de Vugt, M. E. et al. (2003). Behavioural disturbances in dementia patients and quality of the marital relationship. International Journal of Geriatric Psychiatry, 18, 149-154. (Pubitemid 36236238)
10. de Vugt, M. E. et al. (2006). Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer'sdisease and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 22, 35-41.
11. Derksen, E., Vernooij-Dassen, M., Gillissen, F., Rikkert, M. O. and Scheltens, P. (2006). Impact of diagnostic disclosure in dementia on patients and carers: qualitative case series analysis. Aging and Mental Health, 10, 525-531. (Pubitemid 44567658)
12. Endacott, R. (2008). Clinical research: 4. Qualitative data collection and analysis. International Emergency Nursing, 16, 48-52.
13. Eustace, A. et al. (2007). Behavioural disturbance triggers recognition of dementia by family informants. International Journal of Geriatric Psychiatry, 22, 574-579. (Pubitemid 46951757)
14. Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). "Mini-mental state": a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.
15. Glaser, B. G. and Strauss, A. L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research, Chicago: Aldine Publishing Company.
16. Hansen, E. C., Hughes, C., Routley, G. and Robinson, A. L. (2008). General practitioners' experiences and understandings of diagnosing dementia: factors impacting on early diagnosis. Social Science and Medicine, 67, 1776-1783.
17. Harris, P. B. and Keady, J. (2004). Living with early onset dementia: exploring the experience and developing evidence-based guidelines for practice. Alzheimer's Care Quarterly, 5, 111-122.
18. Iliffe, S. et al. (2009). Primary care and dementia: 1. Diagnosis, screening and disclosure. International Journal of Geriatric Psychiatry, 24, 895-901.
19. Kelley, B. J., Boeve, B. F. and Josephs, K. A. (2009). Cognitive and noncognitive neurological features of young-onset dementia. Dementia and Geriatric Cognitive Disorders, 27, 564-571.
20. Krull, A. C. (2005). First signs and normalizations: caregiver routes to the diagnosis of Alzheimer's disease. Journal of Aging Studies, 19, 407-417. (Pubitemid 41683593)
21. Leung, K. K. et al. (2011). Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians. Health and Social Care in the Community. Epublished ahead of print.
22. Luscombe, G., Brodaty, H. and Freeth, S. (1998). Younger people with dementia: diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry, 13, 323-330. (Pubitemid 28254582)
23. Marsden, C. D. and Harrison, M. J. (1972). Outcome of investigation of patients with presenile dementia. British Medical Journal, 2, 249-52.
24. McMurtray, A., Clark, D. G., Christine, D. and Mendez, M. F. (2006). Early-onset dementia: frequency and causes compared to late-onset dementia. Dementia and Geriatric Cognitive Disorders, 21, 59-64. (Pubitemid 43107130)
25. Mendez, M. F. (2006). The accurate diagnosis of early-onset dementia. International Journal of Psychiatry in Medicine, 36, 401-412. (Pubitemid 47105277)
26. Miyoshi, K. (2009). What is early onset dementia? Psychogeriatrics, 9, 67-72.
27. Muhr, T. (2004). ATLAS.ti 5.0. Berlin: ATLAS.ti Scientific Software Development GmbH. Available at: http://www.atlasti.com/.
28. Newens, A. J., Forster, D. P. and Kay, D. W. (1994). Referral patterns and diagnosis in presenile Alzheimer's disease: implications for general practice. British Journal of General Practice, 44, 405-407. (Pubitemid 24292664)
29. Paton, J., Johnston, K., Katona, C. and Livingston, G. (2004). What causes problems in Alzheimer's disease: attributions by caregivers-a qualitative study. International Journal of Geriatric Psychiatry, 19, 527-532. (Pubitemid 38878000)
30. Ron, M. A., Toone, B. K., Garralda, M. E. and Lishman, W. A. (1979). Diagnostic accuracy in presenile dementia. British Journal of Psychiatry, 134, 161-168. (Pubitemid 9100460)
31. Sampson, E. L., Warren, J. D. and Rossor, M. N. (2004). Young onset dementia. Postgraduate Medical Journal, 80, 125-139. (Pubitemid 38388647)
32. Sperlinger, D. and Furst, M. (1994). The service experiences of people with presenile dementia: a study of carers in one London borough. International Journal of Geriatric Psychiatry, 9, 47-50. (Pubitemid 24031262)
33. van Vliet, D. et al. (2010a). Research protocol of the NeedYD-study (Needs in Young onset Dementia): a prospective cohort study on the needs and course of early onset dementia. BMC Geriatrics, 10, 13.
34. van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T. and Verhey, F. R. (2010b). Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry, 25, 1091-100.
35. van Vliet, D. et al. (2010c) How do caregivers of early onset dementia patients perceive the period prior to diagnosis? Abstract Book of the International Meeting of the International Psychogeriatric Association (unpublished), Santiago de Compostela, 26-29 September 2010.
36. Werner, P., Stein-Shvachman, I. and Korczyn, A. D. (2009). Early onset dementia: clinical and social aspects. International Psychogeriatrics, 21, 631-636.
37. Williams, T., Cameron, I. and Deardon, T. (2001). From pillar to post: a study of younger people with dementia. Psychiatric Bulletin, 25, 384-387. (Pubitemid 33026166)